Update on Imuran & Testing

[Joefnh]

As an introduction I was diagnosed this past April with Crohns and collagenous colitis and have been on 9mg of Entocort since that time. My goal was to use the Entocort with a strict GF/DF/ very low soy diet to achieve control of both the Crohns and the CC and at some point taper down the Entocort.

During a recent pill cam and colonoscopy in September, it was noted that the CC had shown about a 12% reduction in the collagen layer thickness, but the Crohns did appear to be getting worse. It should be noted that the Crohns in my case is in an area of the small intestine that the Entocort does not effectively treat.

Since in the case of Crohns the damage can become permanent, I have decided for a few reasons to try switching over to Imuran for control of the Crohns and the CC and taper off of the Entocort. Imuran is a immune system modulator in that it suppresses a specific part of the immune response that is generally responsible for the inflammation and damage seen in Crohns, and the symptoms seen in CC. Imuran is generally prescribed in organ transplant patients to avoid rejection and is also commonly used in rheumatoid arthritis, and more recently in treating IBD conditions like Crohns or in some cases MC.

This is my second week on the 50mg / day dose and the goal is to slowly increase the dose to 150mg / day over the next 3 weeks. During this time I have my blood levels checked weekly for a CBC and liver enzymes to monitor how well I am tolerating this medication, and that it is not suppressing the immune system too much. Overall I am tolerating the medication quite well and have started to see some benefits in the pain levels in the joints of my lower back. This benefit could be from the Imuran or the acupuncture that I have been receiving twice a week for about the last month.

Before starting this treatment, my doctor did a full workup on me including checking my vitamin A, D, E & K blood levels given that nutrition absorption is one of the issues with Crohns, or as pointed out any small bowel involvement with a thickening of the collagen layer (like CC). I was surprised to see 3 of the levels quite a bit lower than they should have been, and have a followup appointment with my GI doctor next Wednesday to discuss the findings

Vitamin A Normal Range 50 to 200 (ug/dl) Test results = 26 ug/dl

Vitamin D 25-hydroxy Normal Range 30.0 to 74.0 (ng/mL) Test results 12 (ng/mL)

Vitamin E unknown levels, stated as low and needs correction

Vitamin K unknown levels, but stated as on the low side of normal.


I have been taking 3000 IU of vitamin D a day and 3000 IU retinol for the vitamin A in conjunction with a good multivitamin, so the low numbers surprised me.

Going forward I do intend on staying on the same diet and continue with the acupuncture as both have demonstrated clear benefits in treating these conditions.

What I am curious about is what would be more of a concern with nutrient absorption, the higher than normal transit time often seen with these conditions, or the small bowel Crohns involvement. Which would result in these low vitamin levels?

Thanks to all on this site for your help over these last months it has been great.

--Joe

[tex]

What I am curious about is what would be more of a concern with nutrient absorption, the higher than normal transit time often seen with these conditions, or the small bowel Crohns involvement. Which would result in these low vitamin levels?

IMO, it's a combination of things, but I really believe that the main problem is inadequate supplementation levels. Heck, I take more vitamin D than that, and I live in sunny Texas, and spend a lot of time in the sun, this time of year. I'm not a doctor, but IMO, you should be taking at least 3 times the amount of vitamin D that you're currently taking. Until you can get your 25 hydroxy D level up to a respectable amount, improvement of your GI issues is going to be hard to come by, and with the immune system suppression on top of that, (from the Imuran), your risk of infection is substantial. Maybe you should ask your doctor for vitamin D3 injections, or try to locate a sublingual form.

Your doctor should have also checked the levels of your B vitamins, because there is a very good chance that they are also deficient, (especially B-12 and folic acid). Your doctor probably didn't check them because the "B" vitamins, (and vitamin "C"), are water soluable, (whereas the others are fat-soluble), but with the rapid transit and malabsorption issues in general, there is a very good chance that they are low, also. B-12 is absorbed in the terminal ileum, (only), and even if Crohn's is not affecting your terminal ileum, there is a very good chance that the CC is.

Good luck with this. You really need to get all these vitamin levels boosted substantially.

Tex

[Zizzle]

IMHO, I think it's your small bowel Crohn's activity that is causing your vitamin deficiencies. I have rapid transit time, but I think my small bowel absorption is OK, so I haven't lost weight or had significant vitamin defiencies while suffering from LC. The bulk of your nutrients are absorbed in the small bowel, so if your colon is rejecting everything quickly, it should not have a significant effect on your nutrient levels.

[tex]

Zizzle,

Diarrhea does not begin in the colon. It begins wherever the digestive process first breaks down. Usually that occurs in the small intestine, (though sometimes it begins in the stomach). As digestion breaks down, osmotic diarrhea originates as a failure of the small intestine to absorb sodium and potassium. As the retained levels of these electrolytes increase, this degrades the absorptivity potential, and induces rapid transit. With secretory diarrhea, (common with MC), by the time the high-electrolyte mix reaches the colon, it's beyond being salvageable, and instead of the colon recovering water and electrolytes, the way it is designed to do, the chemical signals cause it to further contribute to the problem, by secreting additional electrolytes into the lumen, which tends to promote the characteristic "explosive" diarrhea, that is the "trademark" of MC.

We tend to automatically think of diarrhea as a problem with the colon, but the problem almost always originates much farther up the GI tract.

Tex

[Joefnh]

Tex & Zizzle thanks for the responses. Tex the doctor has called in a 1 year prescription for the 50k IU / week vitamin D, I will talk to him about injections if the higher dose does not work well. As far as the the vitamin Bxx goes your right he was not concerned with water soluble vitamins.

I should note I have lost 33 pounds since last April while on the Entocort and I do have a healthy appetite, so absorption may be an issue here. Tex 2 of the biopsies that were taken last April were from the terminal ilium and those did show CC so that may also be part of this issue.

I have my next appointment with my acupuncturist who is also a licensed nutritionist (Tufts Medical) on Monday and I plan on discussing this with her as well.

--Joe

[tex]

Joe,

50k per week is only 7K per day. IMO, that's not nearly enough to get your 25(OH)D level up to where you need it, in a reasonable amount of time. Looking at your history, and in view of your obvious malabsorption problem, doubling what you are now taking will probably only get you up into the low 20-something level, and it will take most of a year to do that. That's way too slow, and way too low. As I've said before, most doctors' strong suit is not mathematics - you have to do the math yourself. Your 25(OH)D level needs to be up at least in the 80 - 90 ng/mL range to fight Crohn's, especially with an artificially suppressed immune system. The 30 to 74 ng/mL "normal" range you cited is low. The cognoscenti place that range at 30 - 100 ng/mL, and for therapeutic benefits, the recommendations go up to 150 ng/mL

Imuran does not interact with vitamin D, so the introduction of Imuran will not affect your response to vitamin D supplementation.

Tex 2 of the biopsies that were taken last April were from the terminal ilium and those did show CC so that may also be part of this issue.

If that's the case, you definitely need extra B-12, (and probably folic acid), supplementation. Your GI doc should have caught that, but he's probably preoccupied with other issues. You probably need more vitamin C, also. Please read this:

Vitamins - Crohn’s Disease patients are usually found to be deficient in Folic Acid and supplemental Folic Acid (800 mcg per day) helps to restore the integrity of the Intestines in Crohn’s Disease patients. Crohn’s Disease patients are generally found to be deficient in Vitamin A (and supplemental Vitamin A (50,000 IU per day) may counteract this deficiency). Vitamin B12 deficiency is common in Crohn’s Disease patients – this does not imply that Vitamin B12 alleviates Crohn’s Disease but does imply that Crohn’s Disease patients may need to supplement with Vitamin B12 (administered by a physician via intramuscular injection) in order to avoid Vitamin B12 deficiency – the sole absorption site for Vitamin B12 is in the Ileum (the same site that is most commonly impaired by Crohn’s Disease). Vitamin C helps to prevent Crohn’s Disease and Vitamin C deficiency is common in Crohn’s Disease patients – this does not imply that Vitamin C alleviates Crohn’s Disease but does imply that Crohn’s Disease patients may need to supplement with Vitamin C in order to avoid Vitamin C deficiency. Vitamin D deficiency is common in Crohn’s Disease patients and supplemental Vitamin D alleviates the symptoms of Crohn’s Disease.

The red emphasis is mine.

http://www.drmanso.com/?p=548

Tex

[Polly]

Hi Joe,

So good to hear you're tolerating the Imuran well! My guess would be the same a Zizzle, that the Crohn's is the major reason for the malabsorption - especially since you have so much involvement of the jejunum, where the bulk of nutrients are absorbed. In the past I had extremely rapid transit times and never had any evidence of malabsorption.

I'm following your progress with great interest. I read in one of your previous posts about other AI symptoms you had experienced....like iritis, I think you said. Sounds as if everyhting is improving, which is good news. I do believe that you are on the right course with the Imuran, acupuncture, and diet. You are a true pioneer!

Love,

Polly

[Joefnh]

Tex you bring up a good point on the amounts of the supplements and the time it would require to achieve the correct blood levels. I guess one concern would be how much would be OK to take?? This being a fat soluble vitamin means it could become toxic if too much is taken. Any thoughts here?

Polly its great to here from you and things are going OK. During the first few days of treatment I found the Imuran can cause some nausea but that went away pretty quickly.

I don't feel like a pioneer, but I understand your statement. I initially was concerned about going to this potent of a medication, but after reviewing the damage that has occurred with the pill camera and seeing the results of mal-absorption, I am more convinced that the Imuran really is the way to go.

My next goal is to allow the Imuran to allow for some healing to occur, then try to plan out a strategy to go off of the Imuran and manage things while they are not flaring with diet and acupuncture alone.

This really has been a time of learning about myself and these conditions.

Thanks again to all on this site for your valuable inputs and support

--Joe

[mbeezie]

Joe,

Glad things are going well with the Imuran. Hope you continue to make progress.

I agree that a more agressive plan of action is needed for the low vitamin D. Need to get your level up asap as cold and flu season is upon us. Did your doctor order the supplements or are you supplementing on your own?

Good luck with your visit with the dietitian. Hope she can use the coupon.

Mary Beth

[Joefnh]

Mary Beth the doctor called in a 1 year prescription for a 50k IU pill to be taken once a week. Before I was diagnosed last year during November of 2009, a blood test showed that my levels were a 2 ng/ml and he did prescribe the same 50k IU per week for 3 months and at that time did bring it up to I think a count of about 36 ng/ml.

At that time my symptoms of D were just really starting. I did have the symptoms of joint & muscle pain, iritis and uveitis for at least 10 years with some hints of GI problems (FMS diagnosis in 2000). It was not until last February that the D really started, with the other symptoms non-GI going out of control That's what led to the colonoscopy and subsequent diagnosis of CC & Crohns.


I have noted that the Entocort initially really did a great job of settling down the non-GI symptoms mentioned above. At about the 4 month mark, the Entocort had been showing signs of reduced efficacy mostly with the non-GI symptoms. Between the acupuncture and Imuran all of the GI and non-GI pain has been 100% gone over the last week, it certainly has been a welcome relief.

-Joe

[tex]

Joe,

Regarding vitamin D dosing, and the risk of overdose. You have to take a lot for a long time, to develop OD symptoms, and remember that you are malabsorbing fat, so you're going to lose a lot of the supplement.

A therapeutic dose to stop the flu, or a cold, from developing, for example, would be 50K IU per day, for 3 or 4 days. You have to begin that dose by at least the second day of symptoms, though, in order to prevent further development of the virus. I have taken that dose for several days, at least a couple of times, without noticing any ill effects, even though my 25(OH)D level was not low, to begin with. I'm not recommending that, for long-term use, obviously, but it's a way to kick-start your treatment, to get your level up to a respectable number, in a short amount of time, so that you can then transition to a more modest dosage rate.

Tex

[Joefnh]

Tex if we look at the numbers it does take a while, lets see what it would take to increase my serum 25(OH) D levels by 15ng/ml within 30 days...

Looking at last years 3 months on 50,000 IU per week would breakdown as follows:

Starting level 2 ng/ml ending level 32 ng/ml

Delta = 30 ng/ml over 90 days or 0.33 ng /ml per day

(1) 50,000 IU / week pill = 7143 iu per day of vitamin D

So with a average daily dose of 7143 IU per day that would mean that I see a gain of 4.62e-5 ng/ml for each 1 IU of vitamin D per day

Now lets say that I want to increase my vitamin D levels by 15 ng /ml in 30 days that would mean I would need to see an average daily increase of 0.5 ng/ml, which leads us to:

0.5 divided by 4.62e-5 which equals 10827 IU of vitamin D per day to achieve a increase of 15ng / ml over 30 days. Thats assuming that my response is similar to last years, and that the dosing and absorption relationship is fairly linear in nature.

I guess the next question would be is 10,827 IU a safe volume to take? and if I understand your previous post Tex, it would be.

If so then my plan would be fairly easy, stay on my current 3000 IU per day and just add the 50,000IU dose.

Thanks for all the comments on this topic

--Joe

[tex]

Joe,

Your math appears to be correct, and that dosage rate shouldn't cause any problems, especially since you will probably malabsorb some/much of it, anyway.

IOW, your plan sounds good.

Tex

[Joefnh]

Thanks Tex for the input here. From what you and others have mentioned this level really needs to be increased. From here forward I will keep taking 10k IU per day and have the levels checked again by late December.

Thanks again

--Joe

[Zizzle]

Devils advocate here...I was one of the first people to jump on the vitamin D bandwagon several years ago, but I have to admit I'm concerned about the megadoses being prescribed nowadays. Yes, you may not experience symptoms of toxicity, but no one really knows what if any long term outcomes may result. For example, much like steroids or thyroid hormone, could your body stop producing Vitamin D naturally once it's overwhelmed with supplemental forms? Everyone knows vitamin D produced through sun exposure is the ideal and most bioavailable. If your level is so concerning, and you know you have intestinal and fat malabsorption issues, I would sunbathe at least an hour a day, take tropical sunbathing vacations in the winter, and look into the tanning beds used by Sarah Palin and other Alaskans--the ones with the beneficial UV rays. Seriously.